Updates Archives - Desmoid Tumor Research Foundation
Menu

Granfondo Axel Merckx in honor of Athina Merckx and DFC

Location: Okanagan, Canada

Earlier this year, Athina Merckx was diagnosed with a desmoid tumor. She had surgery on her right knee in April to remove it and after having some challenges in her rehabilitation is now facing a recurrence. She will be doing chemotherapy for over the next two years. 

Granfondo Axel Merckx will match donations from fondo participants to the Desmoid Tumour Foundation of Canada- up to $10,000.

Athina is a smart, brave young girl who always has a positive attitude toward everything in life. 

For those of you who have met her over the years at the fondo you know she was our super volunteer, always ready to help with set up package pick up and on race day, and we are sure she always wore a smile on her face to brighten everyone’s day.  It is with the same spirit that she is facing this greatest challenge in her young life. 

 
 
 

 

DFC- Desmoid Tumour Foundation of Canada’s “Play It Forward For A Cure”

Location: Toronto, Canada

Desmoid Tumour Foundation of Canada (DFC) will be hosting hosting their 4th annual fundraising event, “Play It Forward for a cure,” in Toronto on April 30th!
 
Once again, this year will feature a live and silent auction and delicious food. Musical performances by Karen LeBlanc as Tina Turner! Karen is a well known, accomplished actress and worldwide Tina Turner impersonator. She will be performing sensational, chart-topping renditions of Tina’s most beloved songs. Spend the rest of the evening grooving to the sounds of Slow Monday, back again with a lineup of 70s and 80s classics that won’t keep you off the dance floor. 
 
Your continued generosity and support has enabled the DFC to reach milestone fundraising goals and make major strides in Desmoid Tumour research. But, the work continues to find a cure. Your attendance on April 30th will make a difference! 
 
Tickets go on sale February 19th at https://desmoidcanada.com
 

 

DFC- Desmoid Tumour Foundation of Canada 3rd Annual Patient Networking & Fundraising Event

Date: May 2, 2019
Location: Toronto, Canada

Congratulations to the Desmoid Tumour Foundation of Canada (DFC) for hosting their 3rd annual fundraising event, “Play It Forward for a cure,” in Toronto on May 2nd.
Over 270 attendees enjoyed a live and silent auction, delicious food, the music of Blues Soloist Shakura S’Aida and the Burlington/Hamilton Band, Slow Monday. Auction items included trips to the South of France, Berlin, the Dominican Republic, any Fairmount hotel and a weekend at the St. Regis in NY!
Special thanks to Dr. Abha Gupta, the Smith family, sponsors and attendees. Hats off to Nancy Croitoru and her dedicated team of volunteers!
We are so grateful for DFC’s dedication to finding a cure for desmoid tumors.

A Closer Look: Current and Upcoming Clinical Trials

To view all clinical trials in desmoid tumors, visit here.
 
Below we’ve compiled additional information about a few open and upcoming clinical trials.

 

 

Open Clinical Trials

Phase II DART Immunotherapy

Despite their name, rare cancers make up more than 20 percent of cancers diagnosed worldwide. DART is a clinical trial testing new treatments for dozens of rare cancers. Desmoid tumor is one of the tumor types included in this trial.

The two drugs under study are new FDA-approved immunotherapies. Immunotherapies are a new class of cancer drugs designed to help a patient’s own immune system fight their cancer. DART is the first federally funded immunotherapy trial devoted to rare cancers. DART stands for Dual Anti-CTLA-4 & Anti-PD-1 blockade in Rare Tumors.

Rare cancers are those with less than a 6 in 100,000 incidences per year, according to the definition used for the DART trial. But only certain rare cancer patients can enroll in DART. Prospective patients submit tumor tissue for a genetic test, and doctors will use the test results to see if a patient’s type of cancer is covered under the DART trial. Doctors will also screen patients using other eligibility criteria, including the stage of their disease, their general health, and any prior treatment.

Once enrolled in DART, patients are treated with two immunotherapy drugs under the brand names Yervoy (ipilimumab) plus Opdivo (nivolumab). The FDA approved the combination to treat melanoma, and the combination is currently being tested on a variety of lung cancers. DART patients will receive both drugs. There is no placebo.

DART investigators want to determine if this combination, given in six-week cycles, can significantly shrink tumors. In addition, a basic science team will use patients’ tumor tissue samples to study how immune cells and genes respond to the drug combination, and see if there are any substances that can be measured in their tissue sample that may predict treatment response. Trial leaders plan to enroll 300 patients.

Rare cancer patients should discuss with their doctor whether DART is right for them. For study eligibility and locations, visit the link below. Please contact raretumors@crab.org with any questions.

 
 

MR-guided High Intensity Focused Ultrasound (HIFU) for Patients Under 30 Years Old

Children’s National Health System has an open clinical trial using magnetic resonance-guided high-intensity focused ultrasound (MR-HIFU), a noninvasive technology, to destroy solid tumors including desmoid tumors in children, adolescents, and young adults. To be eligible for the clinical study, patients need to be 30 years or less with refractory or relapsed solid tumors including desmoid tumors with measurable lesions that are located in bone or soft tissue in close proximity to bone. To learn more or to enroll in the trial, please see http://www.ignite4kids.org or contact Emily Stern, RN at 202-476-2802 (email:  EStern@childrensnational.org) or AeRang Kim, MD, PhD at 202-476-2800 (email: aekim@childrensnational.org).

More about HIFU clinical trials

 

Upcoming Clinical Trials

Phase III Trial for Nirogacestat

 

A new company named SpringWorks Therapeutics has been formed as a spinoff of Pfizer to focus on investigational therapies that hold 
significant promise for underserved populations. 

SpringWorks will now take the gamma-secretase inhibitor that showed promising results in treating desmoid tumors in Phase I and Phase II trials, into a Phase III trial. Formerly known as PF-03084014, the drug is now named Nirogacestat (pronounced “nye-roe-gay-se-stat”). 

We have been working for several years to bring this drug to patients. We will continue working collaboratively with SpringWorks Therapeutics and the investigator community as they design Phase III trials that serve both adult and pediatric desmoid patients.

No details have been announced about the trials or their timing. Rest assured that we will keep you informed as soon as any information is released in the upcoming months.

Please see the press release that provides further details about this exciting development.

 

Phase I Trial for Tegavivint 

At our 11th DTRF Annual Patient Meeting in Philadelphia, we were pleased to have Beta Cat Pharmaceuticals’ Jon Northrup, Chief Executive Officer, and Casey Cunningham, Chief Medical Officer, present an outline of the planned clinical trial of Tegavivint, a new drug that directly interferes with beta-catenin stabilization. Targeting beta-catenin in this way may hold promise for desmoid sufferers, as the science that has evolved shows that desmoid tumors are due to mutations in the beta-catenin gene, CTNNB1, which cause improper degradation of beta-catenin. Tegavivint has shown promise in preclinical studies of desmoid tumors and this trial will be the drug’s first trial in patients.

Beta Cat anticipates clinical sites at the Harvard Hospital system, Memorial Sloan Kettering in NYC, Northwell Hospital on Long Island, Princess Margaret in Toronto, Canada, University of Washington in Seattle, and MD Anderson in Houston.

We will keep you posted as more details are finalized for this trial. Until then, we recommend watching the video of Dr. Sunil Sharma (University of Utah’s Huntsman Cancer Institute) discussing the drug at last year’s Patient Meeting and perusing the slides from Beta Cat Pharmaceuticals.

 

 

Upcoming Clinical Trials

Visit our clinical trials page to find information on all desmoid tumor clinical trials.

 

Phase III Trial for Nirogacestat

A new company named SpringWorks Therapeutics has been formed as a spinoff of Pfizer to focus on investigational therapies that hold 
significant promise for underserved populations. 

SpringWorks will now take the gamma-secretase inhibitor that showed promising results in treating desmoid tumors in Phase I and Phase II trials, into a Phase III trial. Formerly known as PF-03084014, the drug is now named Nirogacestat (pronounced “nye-roe-gay-se-stat”). 

We have been working for several years to bring this drug to patients. We will continue working collaboratively with SpringWorks Therapeutics and the investigator community as they design Phase III trials that serve both adult and pediatric desmoid patients.

No details have been announced about the trials or their timing. Rest assured that we will keep you informed as soon as any information is released in the upcoming months.

Please see the press release that provides further details about this exciting development.

 

Phase I Trial for Tegavivint  *This trial is currently accepting patients*

Here is a video of Dr. Sunil Sharma (University of Utah’s Huntsman Cancer Institute) discussing Tegavivint at last year’s Patient Meeting.  Here are additional slides from Beta Cat Pharmaceuticals.

 

Clinical Trials for Immunotherapy & HIFU

Clinical Trial:  Phase II DART Immunotherapy

Despite their name, rare cancers make up more than 20 percent of cancers diagnosed worldwide. DART is a clinical trial testing new treatments for dozens of rare cancers. Desmoid tumor is one of the tumor types included in this trial.

The two drugs under study are new FDA-approved immunotherapies. Immunotherapies are a new class of cancer drugs designed to help a patient’s own immune system fight their cancer. DART is the first federally funded immunotherapy trial devoted to rare cancers. DART stands for Dual Anti-CTLA-4 & Anti-PD-1 blockade in Rare Tumors.

Rare cancers are those with less than a 6 in 100,000 incidences per year, according to the definition used for the DART trial. But only certain rare cancer patients can enroll in DART. Prospective patients submit tumor tissue for a genetic test, and doctors will use the test results to see if a patient’s type of cancer is covered under the DART trial. Doctors will also screen patients using other eligibility criteria, including the stage of their disease, their general health, and any prior treatment.

Once enrolled in DART, patients are treated with two immunotherapy drugs under the brand names Yervoy (ipilimumab) plus Opdivo (nivolumab). The FDA approved the combination to treat melanoma, and the combination is currently being tested on a variety of lung cancers. DART patients will receive both drugs. There is no placebo.

DART investigators want to determine if this combination, given in six-week cycles, can significantly shrink tumors. In addition, a basic science team will use patients’ tumor tissue samples to study how immune cells and genes respond to the drug combination, and see if there are any substances that can be measured in their tissue sample that may predict treatment response. Trial leaders plan to enroll 300 patients.

Rare cancer patients should discuss with their doctor whether DART is right for them. For study eligibility and locations, visit the link below. Please contact raretumors@crab.org with any questions.

 
 

Clinical Trial:  MR-guided High Intensity Focused Ultrasound (HIFU) for Patients Under 30 Years Old

Children’s National Health System has an open clinical trial using magnetic resonance-guided high-intensity focused ultrasound (MR-HIFU), a noninvasive technology, to destroy solid tumors including desmoid tumors in children, adolescents, and young adults. To be eligible for the clinical study, patients need to be 30 years or less with refractory or relapsed solid tumors including desmoid tumors with measurable lesions that are located in bone or soft tissue in close proximity to bone. To learn more or to enroll in the trial, please see http://www.ignite4kids.org or contact Emily Stern, RN at 202-476-2802 (email:  EStern@childrensnational.org) or AeRang Kim, MD, PhD at 202-476-2800 (email: aekim@childrensnational.org).

More about HIFU clinical trials

2017 DTRF Golf Outing

Date: June 12, 2017
Location: Tuxedo, NY

Over 125 guests enjoyed DTRF’s second Golf Outing at the beautiful Tuxedo Club in Tuxedo, NY, on Monday, June 12th.  Afterwards, attendees enjoyed a cool breeze with dinner on Tuxedo Lake. All funds raised were donated to desmoid tumor research.

Registration brochure here.

Flickr Album Gallery Powered By: WP Frank

 

 

 
 

DFC- Desmoid Tumour Foundation of Canada Patient Networking & Fundraising Event

Date: May 3, 2017
Location: Toronto, Canada

The Desmoid Tumour Foundation of Canada (DFC) hosted its first patient networking and event and fundraiser on May 3, 2017 from 6-9pm in Toronto!

Tickets were $150/ person and $50/ student.

Some of their exciting silent auction items included:

  • Week in 2 bedroom apartment in Berlin (generously donated by: Alain Galaski)
  • 2 nights at the St. Regis in NYC (generously donated by: Mother Parkers Tea and Coffee)
  • Sommelier-led rare wine tasting for up to 12 in your home (generously donated by: HotBlack Coffee)
  • Hamilton Tiger-Cats game day experience (generously donated by: Hamilton Tiger-Cats)
  • And lots more…

 

Congrats on their efforts and reaching their fundraising goal of $100,000!

 

 

2016 Patient Meeting Presentations

Below you will find slides from some of the presentations at our September 24th Patient Meeting. Save the date for next year’s meeting on Saturday, September 23rd in Philadelphia.

 

Benjamin Alman, MD, Department Chair, Orthopedic Surgery, Duke University.

 

Raphael E. Pollock, MD, PhD, Ohio State University Comprehensive Cancer Center. 

 

Kris Vleminckx, PhD, Professor, Ghent University.

 

Kelly Mercier, PhD, RTI International.

 

Sunil Sharma, MD, University of Utah School of Medicine, Expert in Oncology Drug Development.

 

Raffi Avedian, MD, The Stanford University Medical Center.

 

Ian Bier, ND, PhD, LAc, FABNO, Human Nature Natural Health.

 

Secili DeStefano, PT, DPT, OCS, Bodies in Motion Physical Therapy. 

Fourth Annual Desmoid Dash

The DTRF thanks (and congratulates) the donors, participants, sponsors and organizers of the 4th annual Desmoid Dash in Mendota Heights, Minnesota. This 5K event, created in honor of survivor Matt Zechmann, raised over $91K this morning and has raised over $332K since inception in 2013! Unbelievable!

Follow the Desmoid Dash on Facebook here.

Flickr Album Gallery Powered By: WP Frank
  TOP